True NTH

The projects

True NTH is a global initiative, led by the Movember Foundation, tackling critical areas of prostate cancer care. The international network of representatives includes clinicians, academics, patients and organisations from across the UK, Canada, Australia and other countries. Through this initiative we’re working together to identify and demonstrate the best and most cost-effective models for improving prostate cancer survivorship care and support.

The aim

True NTH seeks to significantly improve the lives and experiences of men with prostate cancer, as well as the experience of their partners, carers and family members.

Fundamentally, the programme is about making a step change in survivorship outcomes for men with prostate cancer. The partnership will improve the way in which we all work together to address the needs of men along all points of their cancer journey, helping them achieve a good quality of life and to feel knowledgeable and confident about managing their condition.

Success will be seen as widespread adoption of new models of care that show marked improvements in outcomes for men.

We believe this will be achieved by:

demonstration – what we’ve done and how

evidence – proof of impact

dissemination and engagement – sharing and supporting learning

True NTH in the UK

In the UK, the True NTH partnership of healthcare professionals, academics and volunteers is being managed by Prostate Cancer UK.

It’s a three year programme, with five ground-breaking survivorship projects, selected because of the need for significant improvement in each area and their potential to make the biggest impact on the lives of men living with prostate cancer.

The five projects are listed below. There may be opportunities to get involved in and support these projects. If you have a specific enquiry about True NTH or one of the above projects, please email professionals@prostatecanceruk.org

True NTH Decision support

Project Lead: Lucy Brindle, Lecturer, University of Southampton

The problem

Since treatment options for prostate cancer can be varied and complex, making a 'no-regrets' decision about a treatment path can be very difficult, particularly if options and associated risks are not laid out clearly and not tailored for the individual patient.

How True NTH is confronting it

This is part of a global True NTH project to develop a 'decision aid' for men with localised, low-to-intermediate risk prostate cancer. The ultimate aim is to develop tools in this area for men with high risk cancer too.

Snapshot

There are two stages to this project:

Stage 1 focuses on scoping and reviewing communication between patient and clinician at the time of diagnosis to identify where support is needed. In response, the research team will design aids, such as audio-recordings of consultations for patients, which can support their understanding.

Training for clinical teams will be included alongside information materials to better explain available treatment options and prepare men for making that decision with their specialist.

Stage 2 will be the evaluation phase. The team will evaluate the effectiveness of the intervention and treatment selection option to learn more about if and how men regret the decisions they have made.

True NTH Exercise and diet

The problem

We know that exercise and diet can have a huge impact on health and wellbeing. However, sometimes men lack the tools, knowledge and structures to put this into practice. Obesity and lack of exercise can be common issues post treatment. In addition, men on hormone therapy are at increased risk of cardiovascular problems because of how hormone changes affect the metabolisation and storage of fats.

How True NTH is confronting it

This project will support men through their recovery by:

helping them and their families understand the risks associated with their lifestyle and encouraging them to make changes where needed.

providing men with resources to inspire healthy living such as a pedometer, exercise DVDs, recipes and information on local activities.

new online technology, such as online trackers which can help structure and monitor activity.

Snapshot: Stage 1

Stage 1: Proof of concept

During this stage of the research the team will seek to establish:

Which men, following prostate cancer, are at risk of long term cardiovascular problems?

How can we communicate this risk to men in a way which empowers them to take action?

How can we match prostate cancer related physical and personal health profiles against cardiovascular risk, as well as determine nutritional advice and exercise prescriptions?

This will be done by developing an assessment and exercise and diet kit in pharmacies, evaluating its reliability and then developing the intervention (the first 12 months).

How can we provide the Healthy Living Pharmacy environment for men with prostate cancer?

What makes a successful community pharmacy intervention?

What are the cost consequences for service providers and the benefits for men long term?

The team will do this by piloting the intervention in a high street pharmacy and testing its feasibility (8-24 months from start).

Aim: to provide a staged approach to implementation, with initial pilots in different parts of the UK in rural, suburban and city settings.

There are four elements to the intervention:

Health assessment in pharmacy settings

Exercise prescription (provided by pharmacy tool / algorithm)

Dietary advice (e.g. simple recipes)

Self-management advice and support (two motivational calls from pharmacist and re-assessment at 12 weeks)

True NTH Supported self management

Project Leads:

Alison Richardson, Clinical Professor of Cancer Nursing and End of Life Care, University of Southampton

Caroline Moore, Senior Clinical Researcher and Honorary Consultant, University College London (Division of Surgery)

Sam Ahmedzai, Professor of Palliative Medicine, University of Sheffield

The problem

Research shows that a significant proportion of men feel abandoned by the healthcare system after their initial treatment has been completed. They feel that they receive poorly structured follow up care which fails to identify their specific needs.

How True NTH is confronting it

Men's specific needs after surgery need to be identified, giving them the tools and knowledge to better manage their own recovery. The programme will:

implement the very latest technology to link the man to his care team without the need for expensive hospital based follow ups

quickly and clearly identify who needs help, saving time and creating a more efficient care system.

Snapshot

This project aims to demonstrate, for the first time, how improved practices and tailored tools can be integrated and delivered in a single setting. This can make a massive difference in outcomes for men living with prostate cancer.

In the proposed integrated model of care, follow-up for most men will be via a remote monitoring platform, reducing the need for hospital visits and freeing up secondary care resources, which can be diverted to those with more complex needs.

Men who enter the survivorship care programme will have access to the following resources:

a new holistic needs assessment tool to help them identify needs and concerns and develop an outline care plan to meet those needs

a four hour “transition workshop” to introduce the man to the concept of self management and the available resources to support him to do so

a support worker to help develop personal goals and create a full care plan: the support worker will monitor the man remotely and provide a first line of contact when needs or concerns arise

for post surgery patients initially, checks on patient reported outcome measures. This will enable prompt follow up of clinical needs and drive improvements in clinical practice

IT enablement through access to a bespoke IT platform which provides a communication platform between the man and his care team (Support Worker, CNS, GP). This will allow the tracking of PSA test results and other patient reported outcomes. It can also link to useful resources such as educational materials, web-based self-management resources and online support groups.

Men do not currently receive this level of survivorship care in most treatment centres, so this could make a huge difference to the level of care men receive after initial treatment.

True NTH Managing incontinence

The problem

Incontinence is one of the most commonly cited problems for men post prostate cancer treatment, with some men enduring lifelong urinary incontinence.

Some men are unable to access the products they need because they are unaware of them or because they are unavailable. Furthermore, many services and products aren't adequately designed to fully meet their needs. This can have a huge impact on their lifestyles and can also impact the people around them.

How True NTH is confronting it

This programme will:

develop and test new continence products based on what men have said they want and need

deliver a range of incontinence solutions to meet the breadth of men’s needs via a web/print/telephone intervention and personalised budget

roll out a multi channel campaign to increase awareness of continence products, including creating training packages for health professionals.

It will ultimately lead to:

better information about what continence products are available

better provision of continence products tailored to their personal needs

better products that are innovative, effective and acceptable.

Snapshot

Long-term urinary incontinence is a common consequence of treatment for prostate cancer that can have very damaging effects on quality of life. Yet men are poorly served by current UK continence services which often don’t meet their needs.

Research evidence shows that men lack information about products. They also lack provision of appropriate products, with current product designs wanting in terms of efficacy and acceptability.

Through this intervention, the programme is seeking to improve the quality of life for men following treatment. This will be done through building, testing and implementing a novel continence management system, integrated within existing continence and urology specialist services.

The continence management system will be developed through four modules:

The development of web/print/telephone-based material about continence products and devices. This will enable men and healthcare professionals to make evidence-based product choices and will assist with effective long-term self management of incontinence

The development and piloting of a cost-effective, personalised, integrated NHS absorbent pad and device supply service

The development of an effective and comfortable penile compression/kinking device

The development of an effective washable nigh-time absorbent boxer short.

True NTH Tackling the late effects of pelvic radiation treatment

The problem

40% of men treated with radical radiotherapy for prostate cancer have a change in bowel function that affects their quality of life, with 20% reporting a severe impact on quality of life.

How True NTH is confronting it

To tackle this, this initiative looks to:

improve the whole patient journey, from identifying patients at risk at an early stage to better follow-up and monitoring post treatment

provide training and support to health organisations to make these improvements in care a reality

assist those centres which have developed their expertise in sharing best practice with others, and improving care across their region as a result.

Snapshot

This is a package of multidisciplinary care and treatment algorithms aimed at early identification and intervention. The project aims to reduce the physical, psychological and social late pelvic effects after curative treatment for prostate cancer.

This will enable centres delivering radical treatment to rapidly adopt best practice in managing gastrointestinal late effects. They will then be able to create a series of supra-regional centres of excellence to improve the lives of a large number of men with prostate cancer.

Ultimately this project is looking at introducing a new model of care by sharing best practice in the development of a network of centres of excellence. It will also study the impact on the patients and on healthcare utilisation. We expect these changes to have immediate benefits to patients.